June 29, 2019 10 CommentsCategory: MS, My Story
Tags: MS, MS Relapse, Prednisone, Solumedrol, multiple sclerosis
There’s really no easy way to describe the feeling you have when your neurologist stares you in the eye and tells you you’re in the midst of an MS relapse. That was 2 weeks ago and I feel like I’ve been in a fog – quite literally – ever since.
I sat in my neurologists’ office as he showed me 6 new lesions on my brain, one of which was 1/2” in size and active on my left side of my brain. He was surprised that I wasn’t experiencing problems on the right side of my body based on their location and advised I begin 3 days of IV steroids followed by a course of Prednisone to stop the active lesions from becoming problematic.
It took me less than 3 hours before I got insurance to expedite my request and I had 1,000 mg of Solumedrol pumped into my body. I knew I needed to act fast and essentially nip this in the bud but that week of trips to the hospital felt like a whirlwind.
It didn’t take long for me to experience symptoms of the lesions that hit me like a ton of bricks – well, mentally anyway. My brain felt like it “clogged up” and others noticed my speech started to slightly change. I wasn’t able to process my thoughts or words as easily. Luckily I could function, complete daily tasks and go through the motions of every day life but nothing about how I felt was “normal”. I still don’t feel 100% “normal”. From a cognition standpoint I felt foggy – writing, processing info, calculating basic math felt more challenging. I’m still having every thing I write proofread – including this! – after I’ve re-read and re-written it several times first.
It’s scary. I’m a very self-sufficient person with clear thoughts and intentional plans and this setback has been eye-opening. At the same time, I know that I’m super lucky that my problems are not more severe and that my body never experienced weakening as my doctor thought. It could be a lot worse.
I am reassured by my neurologist that what I’ve experienced is common and I will start to feel better every day from here. With 3 months of Tysabri, my monthly MS medication, back in my system, I’m also hopeful it’ll now be working to it’s max efficacy level. I will get a follow up MRI in two months to see how things are looking but really, I’ve done all I can to “treat” this.
I’m optimistic about what’s next because I need to be.. I need to get back to the old me before all of these post-partum and pregnancy problems started. It’s been non-stop medical complications since Jack was born 3 months ago and we’ve all had enough. I look in the mirror and don’t recognize myself. I’m flushed, tired and bloated from all the steroids. My body is drained after months of problems. I realized recently that it’s been exactly one year of hell on my body with IVF treatments, pregnancy and 3 months of infections after I delivered. It’s no surprise that an MS relapse was next on my list. How could my body possibly handle anymore?
The good news is that I see the light at the end of the tunnel and believe wholeheartedly this will end soon and here’s why. My neurologist believes one of the triggers of this relapse stemmed from a gut bacteria infection I got while in the hospital delivering Jack. Due to my weakened immune system, my body hasn’t been able to fight the infection with antibiotics alone (I continue to relapse), so I’ve qualified for a fecal transplant – yes, as a stool transfer from person to person. More on this later but this new, highly successful treatment has become the go-to trick to help reset your body and gut. It has a 85-95% chance of success and is available at prestigious hospitals here in Chicago, so I am more than willing to do it to get my body back to normal again.
So with time… and this procedure… I am hoping to reset my body and mind. Start fresh and clean. I worked so hard to bring Jack safety into this world and now that he is here, I can’t wait to enjoy being his mom and to spend quality time with our family.
June 29, 2019 at 8:23 pm
Oh, Angie! I am sorry you have been having a tough time! That gut bacterial infection will hopefully disappear with that fecal transplant! I am praying it will be successful! Thank you for sharing so honestly!
Angie Rose Randall
June 30, 2019 at 8:38 am
Thank you, Marjori! I am hopeful that it’ll work and this will all be a distant memory soon. XO
June 30, 2019 at 5:36 am
Wow. So very sorry to hear about the new lesions. How long were you off your DMT\meds?
Angie Rose Randall
June 30, 2019 at 8:39 am
Thanks, Melissa. I hope so too.. I was off of medicine while I was pregnant with my son so 9 months. I did a round of steroids and started Tysabri immediately after he was born but still relapsed.
July 11, 2019 at 10:40 pm
As hard as this is for you and your family, this too shall pass🙏🏼 You have an amazing team of doctors who are guiding you through this tough time.
You are brave, beautiful and a positive person and you have incredible support from your loving family and friends..
All my love and prayers are with you.
July 17, 2019 at 3:37 pm
How do you qualify for a fecal transplant? I recently relapsed too & would love to find out more!! I’m sorry you are having to go through all this, it’s terrible.
Angie Rose Randall
July 18, 2019 at 11:59 am
Thank you for your support! You actually have to have had an ongoing condition or infection that has been treated 2+ times with an antibiotic and hasn’t resolved itself. Only a few places do it because it’s still new and kind of controversial. I had it done and it’s been a life changer. I will write about my experience on it soon.
July 19, 2019 at 9:20 pm
I’m excited to hear more about it!!!!!!
Angie Rose Randall
August 5, 2019 at 2:31 pm
I just posted the blog about fecal transplants 😉